The article, authored by a team from the Penn Science Policy and Diplomacy Group at the University of Pennsylvania, draws on studies from across the continent to examine why participant engagement in biobanking has been constrained. The authors define trust as participants’ confidence that their biological samples will be handled responsibly, used only for agreed purposes, that institutions will act in good faith, and that outcomes will meaningfully benefit them, their communities, or public health more broadly. Crucially, they argue that mistrust in this context is not a psychological or cultural barrier but a rational assessment of whether institutions will respect agreed limits, share benefits, prevent unauthorized uses, and provide remedies when obligations are breached.

The evidence for this assessment is layered. At the informational level, informed consent processes frequently fall short. A study of a community-based health screening and biobank platform in South Africa found that participants who reported understanding a study sometimes recalled nothing of its biobanking components, or had enrolled for screening and reimbursement rather than the research use they were consenting to. Perceived understanding routinely outruns objectively measured understanding, and the least-understood elements are often the load-bearing ones: risks, confidentiality, and compensation. The authors stress that this is not a gap in literacy—comprehension tracks with how information is conveyed, in what language, and over how much time—and that limited consent comprehension also reduces participation in high-income settings.

Cultural and religious beliefs about blood, tissue, and what happens to a sample once it leaves the body add further complexity. In some communities, participants described sample donation as an act of social responsibility, while others compared donating biological material to male circumcision, where removed tissue was believed to circulate and be misused by others. A Cameroonian ethnographic study identified fear of ritual use of donated blood as a deterrent to participation, alongside needle pain, religious beliefs, and limited transparency from health personnel. The authors caution that these concerns should not be treated simply as misinformation, as they may be closely connected to local understandings of health and disease. A 2025 systematic review of informed consent in genomic studies across sub-Saharan Africa found that comprehension challenges were shaped not only by health and research literacy but by community decision-making norms, meaning that informed consent should be supported by comprehensive and authentic community engagement.

But the deepest roots of mistrust are historical. Colonial medical campaigns frequently subjected communities to mandatory examination and treatment, sometimes under threat of violence, and historical exposure to these campaigns has been linked to lower vaccination rates and weaker health-intervention uptake generations later. African biomedical research took shape inside colonial systems in which priorities were set by European administrations, accountability to participants was weak, and consent was rarely sought. These asymmetries persisted after independence, as much health-research funding continued to originate from Global North partners, often giving them disproportionate control over research agendas, samples, and authorship—a dynamic often referred to as helicopter research, where samples and data travel outward while source institutions and communities retain limited authority and benefit.

The authors catalogue a series of episodes that illustrate how this structure recurs. The 2009 Kano litigation alleged that consent for Pfizer’s trovafloxacin study became procedural rather than substantive. The publication of four San genomes in 2010 sparked community objections over verbal consent, pejorative descriptions, and cultural disclosures irrelevant to the findings. The 2019 Wellcome Sanger dispute exposed ambiguity over ownership, commercialization, and future uses. More recently, the 2023 collapse of 54gene and litigation surrounding the control and transfer of its genomic holdings revealed the stewardship risks when a commercial biobank fails. These are not merely isolated incidents confined to the past: Ugandan researchers report that cross-border sharing can impede local capacity and occur under unclear governance and inequitable benefit-sharing, while African pathogen-genomics stakeholders describe informal rather than enforceable arrangements.

The Perspective then pivots from diagnosis to prescription, examining the responsibilities of key actors across what the authors call the biobanking chain. Participants typically encounter professionals who work with them directly—a nurse who has cared for them, a familiar clinician, or a community liaison—so participant trust rests on relational trust built through direct familiarity and shared community ties. Biobanking, however, requires trust in a largely invisible chain: the principal investigator, sponsoring institution, research ethics committee, data analysis team, international collaborators, commercial partners, regulatory bodies, and secondary researchers who arrive years later. Once samples and data progress beyond the relationship in which participation was negotiated, trustworthiness must be secured through governance.

Governments, the authors argue, have a core duty to protect participants through regulators with adequate resources, operational independence, and authority to license and track biobanks, audit storage and data-security practices, investigate complaints, impose meaningful sanctions, and review international transfers before samples or data leave the country. At minimum, every licensed biobank and approved transfer should be publicly recorded and traceable. Research ethics committees must establish culturally sensitive consent guidelines, verify that consent acquisition is performed systematically, and consider tiered consent models in which participants can choose to donate samples for single-time use or wider future use, with or without re-consent. Healthcare professionals, meanwhile, must clarify the distinction between clinical care and research, since participants may mistakenly believe that research is conducted for their immediate clinical benefit—a misconception illustrated by the South African platform where several participants believed they were enrolling for free health screening rather than research purposes.

To align the diverging interests of researchers, institutions, commercial entities, governments, and communities, the authors propose three strategies. First, benefit-sharing should be established as an explicit, binding condition from the outset, negotiated prior to sample collection and incorporated into strict material transfer agreements, with the source community recognized as a party to these agreements rather than an afterthought. Second, equal partnership should be the foundational norm for collaboration, requiring local co-leadership, authorship, and joint decision-making rather than restricting local institutions to sample provision. Third, trustworthiness should become an advantageous course of action, supported by public national registries and transparency infrastructure that make ethical conduct visible and breaches traceable, so that reputational incentives reward actors who adhere to ethical standards and access to funding and authorization can be made contingent upon demonstrated benefit-sharing.

The authors also identify science diplomacy as a valuable mechanism for strengthening cross-border coordination in support of more equitable, coherent, and locally-governed biobanking initiatives. Rwanda incorporates science diplomacy into its national Science, Technology and Innovation policy, South Africa has established dedicated Science and Technology representation within its diplomatic service, and the African Union has recommended regional STEM diplomacy offices and pooled scientific expertise. Countries can scale science diplomacy capacity to available resources by assigning science and technology responsibilities to existing officials, sharing specialist expertise regionally, or deploying dedicated science counselors in strategically important missions. Community-led efforts to establish ethical governance frameworks are already present on the continent, from the San Code of Research Ethics to the work of African research ethics committees within the H3Africa Consortium and the Pan-African Biobanking Network’s efforts to strengthen biobanking expertise, quality systems, and governance capacity. Ultimately, the authors argue, these efforts can strengthen participant engagement, support sustainable research governance across Africa, and foster shared-benefit partnerships to increase African representation in biomedical datasets—positioning the continent, with its high genetic diversity and substantial disease burden, to drive discoveries of global impact.

Subject of Research: Biomedical Ethics and Genomic Research Governance

Article Title: Biobanking across Africa: from participant-level trust to institutional trustworthiness

Article References: Biobanking across Africa: from participant-level trust to institutional trustworthiness. (n.d.). https://doi.org/10.3389/fgene.2026.1953975

Image Credits: AI Generated

DOI: 10.3389/fgene.2026.1953975

Keywords: biobanking, Africa, research ethics, genomics, trust, science diplomacy, governance, H3Africa, benefit sharing, informed consent, across, participant-level